Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America
Authors: Michael J. McNeil, Bella Ehrlich, Huiqi Wang, Marisol Bustamante, Veronica Dussel, Paola Friedrich, Ximena Garcia Quintero, Srinithya R. Gillipelli, Wendy Gómez García, Dylan Graetz, Erica C. Kaye, Monika Metzger, Carla Vittoria Sabato Danon, Meenakshi Devidas, Justin N. Baker, Asya Agulnik, Florencia Moreno, Beatriz Salas, Rosa Moreno, Cinthia Cespedes, Gissela Sanchez, Soad Fuentes, Silvia Rivas, Pascale Gaussant, Clarissa Aguilar, Enrique Lopez, Roberta Ortiz, Diana Cedeño, Angelica Samudio, Jazmin Servin, Cecilia Ugaz Olivares, Fabiana Morosini, Alejandra Chacon, Lilliana Barragan, Ruth María Castro, Juliana Lopera, Miguel Bayona, Diana Lorena Valencia Libreros, Natalia Perdomo, Jeyni Vega, Wendy Rivera, Rosa Vanessa Cabrera, Emmanuel Guerrero, Soledad Jimenez, Libeth Bosh, Doris Calle, Sergio Quintanilla, Sandra Felix, Susana Anaya, Judith Conejo Barrera, Lilliana Gallegos, Martha Valdez, Valentine Jimenez, Susana Juarez, Berenice Aguilar, Adolfo Pineda, Isodoro Romero, Norma Arecil Lopez Facundo, Gelis Ruis Piña, Edgar Francisco Ortiz, Norma Llamas, Rosario Batista
Journal: JAMA Network Open (2023)

Importance Early integration of pediatric palliative care (PPC) for children with cancer is critical for the quality of life of both patient and family. To improve access to PPC in resource-limited settings, barriers to early integration must be understood. Objectives To evaluate the ideal vs actual timing of PPC integration for children with cancer and to uncover barriers to early integration identified by physicians in Latin America. Design, Setting, and Participants The Assessing Doctors’ Attitudes on Palliative Treatment (ADAPT) survey was distributed electronically from August 1, 2020, to January 31, 2021, to physicians who treat children with cancer in 17 countries in Latin America. Main Outcomes and Measures The ADAPT survey queried for understanding of ideal vs actual timing of PPC for children with cancer and for identification of barriers to PPC integration. Descriptive statistics were used to summarize the data. For secondary analyses, a comparison of the associations of previous palliative care training with physician specialty was performed using the Pearson χ 2 test or the Fisher exact test. The McNemar test was used to assess responses regarding the actual vs ideal timing of PPC consultation. Analysis of variance was used to compare mean values for perceived barriers by country income level. Answers to open-ended questions were analyzed qualitatively. Results A total of 831 physicians (578 women [69.6%]; 275 physicians [33.1%] aged &amp;amp;lt;35 years and 556 physicians [66.9%] aged ≥35 years) from 17 countries participated, with an overall response rate of 37.9% (831 of 2193) and a median country response rate of 51.4% (range, 22.2%-88.9%). Most respondents (572 [68.8%]) said that PPC should be involved from diagnosis, but only 117 (14.1%) stated that this occurred at their institution ( P &amp;amp;lt; . 001) . The most significantly ranked barriers to PPC were lack of home-based services (713 [85.8%]), personnel (654 [78.7%]), and knowledge about PPC (693 [83.4%]), along with physician (676 [81.3%]) and family (603 [72.6%]) discomfort about PPC involvement. In addition, these barriers were rated as more important in lower-middle income countries compared with upper-middle income countries and high-income countries. Conclusions and Relevance This study highlights the discrepancy between ideal and actual timing of PPC for children with cancer and barriers to early PPC integration in Latin America. Interventions addressing access to PPC resources, didactic training, and clinical education (with a particular focus on equitable access to basic resources and support) are critical to improve the timing and quality of PPC in the region.